Monthly Archives: January 2014

This is the first in a series of posts about autistic sensory processing and sensory sensitivities. Part 2 | Part 3 | Part 4

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I once had a t-shirt that I really wanted to like. It was a souvenir from a trip to Hawaii. The color, the material, the fit, the design–all perfect. It would have been my favorite new shirt, except for one thing.

It had a tiny thread in the collar that scratched my neck. A thread so small that I couldn’t see it. I’d cut out the offending tag and all of the visible stitching holding the tag in place, but that one little thread refused to go.

So I decided that I was going to get used to it. I was going to pretend that evil remnant of plastic thread didn’t exist. If it was too small to see, surely I could ignore it.

So, not only did Autism Speaks quote Kassiane Sibley without her permission, portraying a well-known and vehemently anti-Autism Speaks autistic advocate as if she was a supporter of theirs.

They then claimed to have permission on her blog.

They then claimed they would take it down.

They instead white-texted it.

They finally took it down after being called on it…

… then they changed the URL and quietly put the white-texted version back up sometime last year.

Alyssa of Yes, That Too has a much better run-down of the whole thing here.

Their white texting makes their toolkit – in which they’re still using her words without her permission – come up on the first page of Google when you search her name. For some permutations, it comes up even before Kassiane’s own sites.

And, believe me, the irony of an organization that paints people like me and Alyssa and Kassiane as “not living” and possessed by demons finding it necessary to steal an autistic person’s work and go to such lengths to keep stealing it is not lost on me.

But this standard-operating-low hurts a friend of mine, and so it makes me angry. Tell Autism Speaks that they need to stop being disingenuous assholes and take that shit down.

I was a kid, visiting some relatives when she asked me. Her voice was sharp and loud, hard on my ears and dangerously low in pitch. In the week I’d stayed here, I’d learned that voice meant anger from my aunt. And she didn’t like me, so she was angry around me a lot.

“Do you even know what that means?”

I was five, I think. I know I was old enough to be in school, but young enough that when people praised me for something, my happy flaps weren’t punished yet. Old enough to know that not making eye contact was dangerous, young enough that I hadn’t yet figured out the forehead trick. I didn’t yet know I was different from the other kids, or that difference paints a target on your back, but I knew most of them didn’t like me. And I loved books.

I looked at her, my words gone from my suddenly-sore throat. I focused on a hair sticking out of a mole on her chin. It bobbed as her mouth moved.

“Answer me! Do you even know what that word means?!”

I knew she was angry. Didn’t know why. What’s wrong with the word exceptional? It’s a nice word. Grandma had said that you shouldn’t say anything if you couldn’t say something nice, but exceptional was nice. Why was she yelling? I didn’t have time to ponder it. I knew that grown-ups got angry if I took time to figure them out. So I nodded silently that I knew what it meant.

“What does it mean?”

I stared. Opened my mouth to say, really good. What came out instead was, “I-I-Iunno.”

“I-I-I – Talk proper! If you looked it up in the dictionary, what would it say?!”

I shrugged. I didn’t know how to use a dictionary yet. Didn’t know that I should. Dad said it was easier to figure out what words meant by the context, which I thought meant the things around it, but I admitted to myself I only knew context’s meaning by context, and felt a stab of guilt for breaking a rule I didn’t know existed. And I stared at the hair. It started to bob again.

“You shouldn’t use words you don’t understand,” she snapped, her voice rising. I covered my ears with my hands.

I wanted to protest, I did understand. Just didn’t know what it said in the dictionary. Didn’t know I should. One of my hands was pried loose in a grip strong enough to hurt.

“Listen! Don’t ignore me!” My arm shook with enough strength to nearly throw me off the couch. “You might think it makes you look smart to use those big words. But it doesn’t. It makes you look dumb.”

She punctuated the statement by throwing me backwards into the couch cushions.

I didn’t understand. My vision wavered as tears filled my burning eyes. I stammered unintelligibly, trying to get out an apology. A dictionary landed in my lap. I flinched belatedly at the motion of it falling past my face.

“Here. Next time you use a word, make sure you know what it means.”

The floor of the old house shook and creaked as she left the room. With shaking hands, I opened the book. Wiped my eyes.

I could math subconsciously. And quickly! So quickly. Faster than a calculator. My parents used to show me off to their friends.

And it felt right in a way that words can’t describe. Just the incredible rightness of getting the answer and knowing it’s right because it feels right and it completes the problem, like I imagine how creative people must feel when they find the last stroke of the brush a new painting needs.

It was as easy to me as walking is to you.

And then, it stopped.

Because, you see, my way of math was wrong. “You can’t do that in your head!” adults started to tell me. “We need to see your work.”

Never mind that my work couldn’t be worded or written in a way that made sense to them. “It’s right because it’s purple” made the adults scoff and tell me to quit being stupid.

The more understanding ones would say, “I know you know how to do it, and I might not understand how you do it, but I know you can do it. But even though I know you can do it, the principal won’t believe me that you can, so you have to learn how to write it down our way so you can show him how it’s done.”

My idea of getting him to come quiz me was scoffed at. He’s a busy man. And besides, nobody accepts “purple” as a right way to find the answer.

Eventually, I figured out how to emulate their way. I’d start at the answer, and walk sideways to the question. It was slow and time-consuming, but it worked. Eventually, I learned to do my math backward, by emulating the “normal” way of thinking about math. After a while, I did all my math backwards, because it was faster than feeling the rightness of forwards and then stumbling sideways to get the “work” on the paper.

I became so used to walking backwards, I lost the feel for walking forward.

And now I can’t math. Not like I used to. Not by feeling and rightness and color.

I’m starting to adjust to the school situation, but as my body is wont to do, it decided to hit me with a new health cootie when I’m low on mental energy reserve, so I’ll be quiet a bit longer as I’m learning how to manage my what is probably reactive hypoglycemia.

I kinda have to devote full attention to that because seemingly-random hypoglycemic episodes are not fun and also quite dangerous if you happen to be cutting up veggies at the time one hits (like last night).

My doctor and I are on the case. I’m not thrilled to have to learn how to manage yet another weird medical cootie (seriously, I have enough) but I don’t exactly get a choice in the matter so I have to adjust.

If you are not disabled, you should go to Twitter and look up the hashtag #abledpeoplesay and then not do any of the things being vented about there.

If you are disabled, go look it up to have camraderie and learn about microaggressive things to other disabilities.

I might have posted way too many of them yesterday as the trend took off shortly after I was chewed out on public transit for treating an asthma flareup. Because won’t somebody please think of the children?! And it’s apparently inappropriate to take inhalers on a bus.

What is tone policing?I’ve created some examples based on what I see people saying. Often. Too often. Tone policing doesn’t just apply to Autism Speaks discussions. But that’s what’s on my mind lately.

Example 1:
Person A: Autism Speaks is a horrible organization which promotes the hatred of Autistic people. Giving your money to them is funding a hate organization. I am Autistic and you’re financing hatred of me.
Person B: I agree with you but people are just going to dismiss you as cranky and angry if you take that approach. You need to gently educate people if you want them to listen to you.

Example 2:Person A: You shouldn’t support Autism Speaks because only 4% of its budget is used to provide direct services to Autistic people. Autistic people are excluded from meaningfully participating in the organization…